Pretty In Pink

Posted on by kathleenyago

Hana is doing great! She turned 18-months a few days ago. Right now she is really into playing with balls and cars. She also likes opening and closing anything and velcro. Our friends got her a slide and she loves it! I also surprised her with a tricycle, which she also loves. I think she is still making up for lost time when she was in the CVICU and laying in bed, sedated for five weeks.

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Hana is sleeping better at night, especially since she is getting bolus feeds instead of continuous feeds. She is only getting her vitals spot checked a few times in the night and every four hours during the day. They do check her Berlin Heart pump for clots and deposits every four hours. She is also only getting weighed three times a week. Unfortunately, she is starting to get bored with the hospital preschool, which is not really geared toward regularly attending, long term stay kids. More unfortunately, Hana’s IVIG therapy does not seem to be working quite as they had hoped. This is the therapy that suppresses her antibodies so that she can accept a wider range of donor hearts. The therapy is suppressing the targeted antibodies but it is making others skyrocket. They will try one more round before considering other options. Maybe it means we will have to wait longer, I don’t know, you never really know.

We have received some really great activities for Hana – learning and sensory things. She is really into learning words and it is amazing to watch the joy of learning unfold right before your eyes. I think what Hana likes best right now is walking. So, we’ve been doing a lot more of that. I push the Berlin Heart Ikus around the third floor following her (chasing her sometimes) and keeping her from going past her six foot drive line. She is not that fast yet but she is still unsteady and falling is not a good idea with all the blood thinners Hana is on (sometimes she bleeds for a whole day just after getting an injection). I’m thinking of getting her one of those toddler leashes just to keep her safe so she does not pull on her drive line, which could be dangerous, but I’m not wild about the idea.

The Berlin Heart Ikus is not the easiest thing in the world to push. (The Ikus is the box on wheels that contains the air compressor and on top of it sits the laptop computer that runs everything.) First, it weighs 200 pounds. Second, the wheels do not turn very easily at all. Third, the long electrical cord (which I am very glad to have because it lets us move away from an outlet) is always getting in the way of the wheels (this is more of a problem in a small space or when Hana goes back and forth, rather than continuing on straight ahead). Someone said that pushing the Berlin Heart Ikus is like pushing the refrigerator. So, if you are going to push a refrigerator through the hospital day after day, you might as well do it in style.

Yesterday, Hana got a new Ikus. Now, she needed a new one anyway because her original one was due for routine service. But this is the surprise that Hana’s nurse practitioner, who specializes in these devices, has been working on. Hana did not get just another boring blue and gray Berlin Heart Ikus. She got a pink Ikus. A hot pink, Barbie pink, candy pink so sweet it will give you a stomachache. It’s actually very exciting and many people have come by to look at it, which has been kind of nice. I’ve heard there are only two pink Ikus’ in the world. Now we just need a name for this hot pink beauty. Any suggestions?

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On another note, a few friends are doing various heart fundraisers.

Two fundraisers are children who are doing jump rope events for the American Heart Association. They are jumping in honor of Hana! You can visit Carter’s site:
Carter EarleyIf I get Michael’s site, I will share it!

Another fundraiser is local to Santa Cruz and is for the Children’s Cardiomyopathy Foundation, (Hana has dilated cardiomyopathy) in honor of their daughter, Maya, who is a few months younger than Hana and also has dilated cardiomyopathy. Hana and Maya are heart buddies and unfortunately they got to spend some time in the hospital together (although we knew them before their hospital stay). If you are in or around Santa Cruz, there will be a bake sale at Shoppers Corner, 622 Soquel Ave, Santa Cruz from 10am to 1pm on Sunday, February 28th.

The last fundraiser is for Hana’s Heart. It is being run by a college friend of mine. We are very humbled and honored by all the support and help. It warms our hearts. Here is more about it:

https://www.facebook.com/lovesap/posts/10208846272332915
Pink Zebra Fundraiser

Day 98 in the hospital, Day 79 post-Berlin Heart, 71 days on the transplant list.

What We Are Waiting For

Posted on by kathleenyago

First off, I want to say Hana’s surprise has been delayed again and now we are looking at Friday of this week or Monday.

Second, Hana is doing great! She’s not puking too much, her vitals are stable and we are just working on getting some of her transplant blood work repeated since some of it was done a year ago. She seems to be fairly on track with her developmental milestones other than eating. Her walking is actually shakier than when she was at home and I attribute that to the pump and drive line always being in her way. Some development will be delayed and that’s just the way it is. We are working on independent play skills and sensory learning since that’s where I can actually do something to change what is.

We are settled, as best as we can, in this “camping” mode in a child’s room which is inside a hospital. I still get a bit frustrated at our loss of autonomy and independence, especially when it comes to Hana’s care. At home, I was always tweaking things in order to optimize outcomes for her – such as when to give meds or tube feeds so she doesn’t feel sick or tied down and she gets the maximum amount of normal kid activity and sleep as possible. I was particular, maybe even meticulous. I do my best here but it can be challenging. I get frustrated when people get bent out of shape because they see me whiz down the hallway carrying Hana, pushing the 200 pound Berlin Heart Ikus with a backpack of activities and we are on our way to the seating area on the third floor for a change of scenery. The get bent out of shape because they can’t fathom all that being manageable. Just because they imagine it being hard for them does not mean it is hard for me. It may require a lot of effort, but that doesn’t make it hard or even unsafe. I don’t want to be limited by others’ limiting beliefs. I can be very stubborn that way, but please don’t tell me what is not possible just because you cannot imagine the possibilities. This is the hardest part of living in a hospital (in our current situation).

But. Yes, there is that. I busy myself creating as much of a normal childhood for Hana as possible and maybe that is because I want to enjoy the break from worry and high stress that will come when she has her heart transplant. I know that day must come and hopefully soon. But it is a hard thing to hope for. In order for Hana to live, another child must die. And although that child is not dying so Hana can live and they would have died either way, still, it is the death of a child that will save Hana. Somewhere in the western United States a child is living and breathing tonight who one day, relatively  soon, will not be, and Hana will get his or her heart. So, to hope for this day to come soon is hard to wish. But the day is coming with or without my hope and what I tell myself is that we hope Hana gets matched with an available heart soon. But still.

Forever, as long as I can make that stretch, I will be full of gratitude for the family of that child and the child whose heart will become Hana’s. Thank you for the honor with such a precious gift.

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Stopping The Pump

Posted on by kathleenyago

It was a year ago tonight that we first arrived at Stanford via life flight. UCSF doesn’t have a pediatric heart transplant program and they felt that Hana was going to need one. They were right, although who could have predicted that we would wait ten months before listing her for transplant. I had never been more exhausted in my life than the night we arrived at Stanford. My body ached, I hadn’t slept, and then the worst part was the critical condition Hana was in. They talked to us about ECMO which is a type of heart and lung bypass life support system.

Hana never did have to go on ECMO but they had to he big sitting outside her room, waiting and ready, just in case. I’ll never forget hearing the words of the attending physician in the CVICU, “I’ll do whatever I can to save your daughter’s life.” Chills. Interestingly enough, when we first saw her again in the CVICU this past November she asked me if I remembered her and I told her, “Remember you? I couldn’t forget you.”

My dad flew in that night, my mom had arrived that morning. The social worker had reserved Paul and me a sleep room. When we finally crashed in the room. I could hear an awful noise that I kept imagining was feet running down the hall for an emergency. I kept looking out the door and down the hallway to see if they were running into Hana’s room, but all was quiet. (The noise was things moving in with he tube system.)

Now we are here. Things are so different but we are here at Stanford on this day again. Today they decided to stop Hana’s Berlin Heart pump while doing an echocardiogram. I was nervous. There were two heart failure cardiologists (including one of the Berlin Heart experts), a heart failure fellow, the VAD nurse practitioner, the echo tech and the bedside nurse. The fellow operated the Berlin Heart hand pump, manually pumping while the tech took her images. Then they stopped hand pumping for three seconds. Then they started hand pumping again and then hooked the drive line back into the ikus. Hana didn’t even seem to notice. They wanted to see how well her heart would function on its own without the help of the pump. I don’t yet know the results.

It was otherwise another good day! Hana even tried some chocolate that we received in a package! We also got the official clearance to move about the third floor without a nurse! We had to sign a contract acknowledging the new rules of this arrangement (in some countries people are going home on the Berlin Heart!) but the new freedom will be nice!

Our surprise that the VAD (ventricular assist device) nurse practitioner has been working on won’t be ready until Tuesday – stay tuned!

86 days in the hospital, 67 days post-Betlin Heart, 59 days on the transplant list.

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One Year Ago

Posted on by kathleenyago

It was one year ago today that we learned about Hana’s enlarged heart. It has been, without a doubt, the most transformative year of my life. It has touched us in ways I can not describe. We have been so blessed by all the support we have received. It has come from family, friends near and far, friends we haven’t talked to in years or decades and even strangers. It has been imagetruly amazing. I am in awe and I am humbled.

This time last year they (the cardiology intensivist and neonatologist) had just finished hours of work trying to get an arterial line started and they were unsuccessful. They could barely get two IVs. The neonatologist bought us coffee. All night I sat in a chair by Hana’s bed and tried to comfort her as she tossed and turned. I might have dozed off for 30 minutes. We had no idea yet how bad it was.

Its amazing how quickly life can change and in ways that are swift and heavy and shocking and full of fear. The best we can do is ride along with it. I learned that people care, or, they can care, if you show them what to care for. People care about Hana. And they care about Paul and me but they really care about Hana. And how easy she makes it! Somehow she rallies people around her. I am amazed by this. She also handles things with so much courage. With all things unpleasant, I am there to provide comfort for her pain and witness to her fear and suffering and then to help her move on.

We are so grateful. Things are going really well. Being grateful makes me happy. It’s not too hard to be happy here. In honor of the one year anniversary, I registered myself as a bone marrow donor. I’ll do what I can.

Hana is doing really well. She is sleeping better. She is babbling and signing a lot. Her walking gets better every day.

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9 Kilos

Posted on by kathleenyago

imageA couple of days ago Hana finally weighed in at or above 9 kilograms. That is about 20 pounds (I only know that because I just used a conversion calculator). She seems to have been stuck at 8.8 kilos for so long that I’m glad she has finally tipped the scale.

Hana’s recent blood work showed that her liver enzymes are a little high, so they will watch that more closely. Also, her hematocrit was low, so they increased her iron again. In addition, they want to avoid giving her another blood transfusion so they may try Epogen therapy. This would be an IV drug that would be used to stimulate the production of red blood cells.

Otherwise, things are going very well. Hana is really starting to walk and talk – I think she has finally surpassed the walking skill level she was at prior to being in the hospital. Just is the last couple of days she started babbling, making new sounds and signing lots of new words. It is very exciting.

Possibly on Friday, but probably on Monday there will be a fun surprise that one of the nurse practitioner’s has been working on.

Stay tuned…

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More IVIG

Posted on by kathleenyago

Hana had another IVIG treatment yesterday and today. It went much better than last time. Judy was also here to help so I actually got to go outside. The downside of IVIG therapy is that they don’t really want Hana to leave her room. So she missed preschool and PT/OT.

Hana continues to enjoy her new room. It is so much easier to move around! We cycle through toys and activities. Today we set up a zip line in the room. Hana loved that! (I wish it were my idea but it wasn’t. Thank you Katie.) 

We are all sleeping better. I am still falling asleep when I pump so I don’t get around to writing an update or responding to messages! Pumping is going to end. Hana is switching to pediatric formula (Peptamin junior) through her NG tube but is only drinking straight breast milk by mouth. Eventually she will need to drink something else! She is very interested in food lately and has been doing good experimentation. We still have a long way to go and no one expects her to eat much while on the Berlin heart (all kids tend to lose their appetite and vomit once a day).

  
  
  
  
79 days in the hospital, 60 days post Berlin Heart, 52 days on the transplant list.